Thursday, May 31, 2012

Crystal Chin, 23, came to Canada from Taiwan at age 10 and can’t remember a time when therapy wasn’t a constant in her childhood. Crystal has profound insights about growing up with a disability in a culture that values normalcy.

Crystal on therapy: My experience was extreme. I was doing therapy every single moment. My mom would drive me to physiotherapy every day, five days a week. Then my dad would come home and do an extra hour of physio with me at night, after work. My mom was a stay-at-home mom and she would do stretching with me and focus on doing up buttons and zippers. My parents wanted to integrate every single bit of therapy into everyday life. For example, they'd help me all the time with how I was sitting and correct me if I was holding my spoon wrong. I had no idea swimming was considered a leisure activity. For me it was aquatic therapy.

As a kid, you’re constantly finding out what’s wrong with you and I think even a typically-developing child would get some sort of inferiority complex from that! I’m just not good enough. I can’t even hold a spoon. I can’t even hold my pencil. There has to be more to a child’s identity than going to physio every day.

I think for kids who are ambulatory, or close to being, therapy is tantalizing for parents. No one can say when their child is going to reach his final level of function. There’s a sense of “If we can just do x, y, z. You’re so close.” But for the child it may only improve function to a slight degree. “This is my final product. Can you just leave me alone?”

Crystal’s advice to parents: Have a more balanced life, be your child’s parents, not their therapists, and go out and have fun. There need to be times for therapy, but there should also be times when I’m allowed to be a kid and we can be just a typical family. Remember that you can't get time back. Sometimes my parents look back now and I think they realize what a different childhood I had from my younger sister. Remember -- you can't give a child back their seventh year.

Try really hard not to compare your child to other children. I always found it interesting that when I was young my parents would say “You’re great!” But then I spent all my time being taken to different doctors who were supposed to fix me.

It didn’t really occur to me that I needed to be fixed until I started school. I got to see how other children were developing and that made me worry a little bit. So why can’t I do this? They can do it. In a way, in the beginning, I really wanted to be fixed. I wanted to be like the other children and I really wanted to have a life. It wasn’t until my early to mid adolescence that I had had enough. I wanted to take time off therapy at home and focus on other things in my life. My parents couldn’t understand why. I thought I’m 15 and I want to learn how to cross the street. What is laundry, and how do you do it? I want to use the microwave. It’s important not to get stuck on one developmental step like walking. It’s important to look at the whole picture.

Crystal on self-esteem: Gaining a positive identity was more of a process. You don’t just wake up one day and have it. I always felt I was really ugly because I couldn’t sit up straight and I remember a physio pulled me in front of the mirror and made me point out all the things I see about myself. I pointed out everything CP-related: “My knee is bent, I can’t stand up straight, my knee is rotated, I don’t have any balance.” Then the physio pointed out all the things she saw, and they were all positive. “I see this 10-year-old girl who is always smiling, always positive and working hard despite the things she can or can’t do. You’re so cute. You’re wearing pink glasses and a red dress, and your pink shoes match your glasses.” There were certain triggers like that where I’d say “Oh, maybe I can look at myself differently.”

Crystal on social vs. medical advances: We need to advance in the medical field, but we need to advance in how we see things, how we think about things and the way we treat people. What are our values? Where do they come from? Why do we think the way we do? I can take the alphabet, and make it into words, and take the words and put them into sentences, and the sentences into paragraphs and the paragraphs into pages. Good for me. What about people who will never be able to do that for different reasons? What happens to them? Why does society deem them as persons of less value? Everyone has rights, no matter what their capacity. But the way the system is set up, if the person can't advocate for themselves, they don't have access to their rights. It’s not a question of medicine. It’s a question of what we value.

What a beautiful person you are, Crystal -- both inside and out! I really appreciate your thoughts on how parents should be "parents and not therapists" -- this was something that I learned fairly early on in my daughter's life, but I still have many guilty feelings about it and am really grateful to hear it confirmed by you! I guess balance is so important for EVERYONE!

Thank you for being such an amazing inspiration to others. You are a talented and beautiful young lady whom I have had the pleasure of working on committees with for many years. Thank you for being so candid and sharing your personal perspective I really appreciated it.

This is definitely a must read concerning perspectives on rehabilitation and disability and i have shared the link in a number of places. I suppose the counter point could be that this is the view of a person undergoing the attempts at rehabilitation but it is impossible to know if that extra bit of therapy didnt succeed in providing her eith the tools that eould also allow for other achievments as well as the mental and physical fortitude that the years of therapy built up. I tealize its about finding balance and seeing the person, not just the dysfunction which needs correcting. It will never be a perfect harmony.

Crystal, you are a very wise young woman. Thank you for sharing from your experience.

Two thoughts from you stand out. The first is that we cannot gain back our kids' childhood, that they must enjoy it while they are kids. That is so powerful!

The second touched me deeply, in that you only saw your disabilities in the mirror as a child and not the beautiful girl you were. It is critical that the heros in our kids' lives remind them often of how wonderful and valued and beautiful they are. Thank you for sharing this important reminder.

Eric brings up a good point about striving for a balance that allows our kids to maximize their potential skills while still respecting the joy of childhood. It's quite a dance!

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